University of Tasmania, Australia

Carers'CARE App Survey

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Examining dementia carers’ views on support services and use of technology

Invitation:

You are invited to participate in a research study examining informal dementia carers’ views on support services, and how technology, might be used to provide such support.

This research is being conducted by a collaboration between the Division of Psychology and the School of Technology, Environments and Design at the University of Tasmania, and is headed by Professor Jenn Scott.

Before deciding whether or not you would like to participate please read through the following information so that you have an understanding of the purpose of the study, what it will involve, and any risks and benefits of participating.

1. What is the purpose of the study?

The purpose of this study is to better understand informal dementia carers’ views on support services for them in their caring role, and how technology, such as mobile phone apps, might be used to provide such support.

2. Who are we inviting to participate?

We are looking for people who provide care or support for a spouse, partner, parent, other family member, or friend with dementia.

3. What will I be asked to do?

Should you choose to participate, you will be asked to complete a one-off online survey. This survey will contain basic questions about you and your caring situation, and your use of, and views about technology. You will also be asked about your views on how technology might be used to assist you in your caring role. Most responses will be multiple-choice style.

Your participation is entirely voluntary, and you may discontinue your participation at any time prior to the submission of the questionnaire. At the end of the questionnaire, you are invited to leave your email address or phone number, to allow us to contact you in the future, if you desire, regarding our research. If you leave and email or phone number, we may contact you to offer you the opportunity to participate in follow up surveys or focus groups. You are under no obligation to participate in this subsequent research.

4. Are there any possible benefits from participation in this study?

This study gives carers of people with dementia the opportunity to discuss their views on technology, such as mobile phone apps, and how these may be used to support them in their caregiving roles. This information will help shape new cutting edge support tools that are being designed to help people who are in similar situations to you.

5. Are there any possible risks from participation in this study?

While we do not anticipate answering these questions will cause any distress, if you feel any distress during the questionnaire we encourage you to stop immediately. If you wish to discuss these feelings with someone, you are welcome to contact the research team by email at carers-care@utas.edu.au or by phone on (03) 6226 2576. You could also engage with other support services such as lifeline (13 11 14) or Beyond blue (1300 22 4636).

6. How will my confidentiality be protected? What will happen to the information when this study is over?

Data will be stored in a non-identifiable manner, on a secure, password protected computer and will only be accessible to the researchers. Raw data will be destroyed after seven years.

7. What if I change my mind during or after the study?

Participation in this study is voluntary and you may withdraw at any point prior to the submission of the questionnaire. If you do not leave an email address or phone number, once you have submitted your responses we cannot remove them, as there is no way of identifying which information belongs to you. If you did submit an email address or phone number allowing us to contact you regarding further research, you can contact us and have your email removed from our contact list, and/or your data removed from the study.

To have your email or phone number removed from our contact list, please email us at carers-care@utas.edu.au, or contact us by phone on (03) 6226 2576.

8. How will the results of the study be published?

Preliminary results will be available in late 2018. If you would like a summary of the results, please contact the researchers via email carers-care@utas.edu.au or by phone on (03) 6226 2576.

9. What if I have questions about this study?

If you have questions about the study, feel free to contact the research team by email carers-care@utas.edu.au or by phone on (03) 6226 2576.

This study has approval by the Tasmanian Social Sciences Human Research Ethics Committee. If you have any concerns or complaints regarding the conduct of this study, please contact the executive officer of the HREC (Tasmania) Network on (03) 6266 6254 or email human.ethics@utas.edu.au. The Executive Officer is the person nominated to receive complaints from research participants. Please quote ethics reference number H0016895.

Thank you for taking the time to consider participation in this study. Completing and submitting the questionnaire on the online survey will be taken as explicit consent to participate in this study. To continue with the survey, Click the “next” button.

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Authorised by the Associate Director, Service Delivery & Support , IT Services